New member

[ditzy65]

Hi Karen

Poor you, hope the Physio can do something to sort that out, what a pain for you. Are you ok apart from that, no problems booby wise??

Work is going ok, seems like I was never away lol. Hot flushes and nauseau keeping me awake at night, not the menopause had a blood test for that, so just the Tamoxifen.

Got my genetic results, it's a gene called CHEK2 waiting to see the consultant at Oxford now...god I hate waiting!!!!

Take care and good luck at the physio

Erica XX

[KC]

Hello Erica,
Arm still same I'm afraid, go physio this Thursday so I'll have a chat to her about it, see how long she thinks it will go on for.
Are you ok? Have you settled back into work.
Karen xx

[ditzy65]

Hi KC

how are you doing? hoping your arm is getting better and you are coping with any problems

love erica xx

[ditzy65]

Hi KC

Yes it does help to talk, especially with ladies who have been through the same...some people just don't get it do they!! I havve had a range of comments said to me and if I didn't laugh about them I would cry lol.

My BC nurse said she was going to refer me to a councellor at the hospital as I went through a rough phase, but that was 8 weeks ago and I haven't heard a thing...good job I'm feeling better in myself now!!!

I hope your follow up teatment has been good..it's abit of a shock to the system to have to go it alone after such a busy time before.

Have a lovely weekend, I work in a school so I'm on half term now, going to sleep for a week lol

take care xx

[KC]

Hi,
Yes I'm same really mostly I'm ok then at times I think a lot about things, it was a very scary time i have a range of emotions sometimes like yourself, it's good to have a chat tho with you..it helps x

[ditzy65]

Hi KC

keep up the physio and I'm sure it will get better soon, not very nice for you x

how are you coping with life after the C word?? I'm finding it all abit up and down, waiting for results sure doesn't help!!

Chin up

xx

[KC]

Hi Erica,
I'm not doing so bad thanks, I have a frozen shoulder that's why it's painful & stiff.
Physio said it can last a few months, it is just difficult at moment to do certain things...even putting a bobble in my hair takes me ages!
Been a long time for you to get your results hasn't it, not nice when you are waiting for results you can't seem to think of anything else.
Hope they come through soon for you.
Let me know when you hear anything...xx

[ditzy65]

Hi KC
how are you doing? any change with your arm? still waiting for my results!!!! take care xx

[suzanne2]

Almax
It's very scary was your lymph nodes involved and do u know the grade, I been petrified, xx

[Alimax]

Hi Suzanne,
I'm just joining too and this is my first message so I hope I'm doing it right.
I was diagnosed in February - no idea what my type was. I'm sure that they told me but I seem to have taken very little in.
All very scary isn't it - I came home and googled and haven't had a full nights sleep since! My consultant advised sticking to breast cancer care and Macmillan websites and never be tempted to look at anything else
Take care xx

[suzanne2]

Hi I've just joined I have stage 3 TNBC and am terrified of what I have read on the net. I have had a lumpectomy with good margin clearance, 5 lymph nodes were affected but have all been removed, ct and bone scans were clear, having my 3rd fec Friday then 3 taxotere, then radiotherapy, xxx

[BotherWiBoobs]

Thank you both Erica and Lucy for your kind reply 🙂 

[ditzy65]

Hi BotherwiBoobs

What you are saying and feeling is exactly the same reaction most ladies I have spoken to have. It will wear you down and you have to deal with that however you need to. Chatting on here helps, as you realise that you're not the only one and these feelings are normal. I thought I was going mad..fortunately not!!

I hope your treatment goes well, will be thinking of you

love Erica xx

[ditzy65]

Hi Karen

sorry thought I had said about tests...BRCA came back negative, they are now testing for this TP53 mutated gene (no me neither!!!) it is a cancer suppressant gene, hopefully will be clear too...waiting is all we seem to do lol

Keep your chin up

love Erica x

[Lucy_BCC]

Hi BotherWiBoobs and welcome to the BCC forums

Along with the support you will find on the forums please feel free to call our helpliners for further practical and emotional support and information on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

I am posting a link to the just diagnosed area of the site where you will find information about DCIS and further support ideas which I hope you will find helpful:

http://www.breastcancercare.org.uk/category/cancer-journey/just-diagnosed-primary-breast-cancer

Take care
Lucy BCC

[BotherWiBoobs]

Hello,

not sure if I am replying to the right place. I just joined here tonight. Not sure how it works but it's a relief to not feel on my lonesome 🙂 Was diagnosed with DCIS on Wednesday and am waiting for another biopsy to see how much they'll take out I suppose. I was really strong and up-beat during the first few days, cracking jokes, comforting my friends - yes 1 of them will have to be re-christened water-works! That's kind of wearing off now. Beginning to feel more vulnerable and tired of having to tell people as it makes it all the more real. Am a positive person but this is difficult stuff.

Anyway, glad to have found this.

xxxx 

[KC]

Hi,
My arm still same really, don't know how long it's going to last can be really painful at times.
Not sure what TP53 is really which you are waiting for, is it something you will need more treatment for?
Hate waiting for results, must be still a worry for you, let me know how you get on.
Karen x

[lexilou3]

Hi all,

you seem to have forged some great support here - but feel you are isolated from so many more,,,, on the going thru treatment pages there are many more willing to help support you & give advise / sympathise & help carry you thru these early days.

Anyone in Berkshire there is a closed facebook group which is amazing too.

Hope you find you ways to those other pages,

Best wishes for the coming weeks,

LL xx

[ditzy65]

Hi Karen

hope all is going well with you and things are inproving arm wise!! The back of my arm is still numb..how long does this last!! it's also abit swollen I can notice in my clothes...apart from that all ok. Still waiting TP53 results hopefully soon, check up next month but all seems of physically.

Still waiting for an appointment to see a councellor at the hospital..5 weeks!!!! don't think i need to now!!

Take care

xxx

[KC]

Hi Erica,
Been going to physio, I do same exercises I do at home, my arm gradually got worse over these last few months, maybe over time will get better...hope so.
I only work part time hours, so hasn't been too bad for me returning to work...only started job last November & then diagnosed with breast cancer same month, but been really understanding which helped.
Glad you are feeling better.....Karen x

[ditzy65]

Hi KC

Sorry to hear your arm is still not good, are you still at physio? Mine is still abit numb but no where near as bad as it was.

I'm doing ok, back to work full time soon..that will be a shock to the system lol

Take care

Erica xx

[KC]

Hi, yes not so bad thanks, been to breast care clinic today for my check up, things settling down after op, shoulder and arm still bad tho.
Go again in another 3 months, then mammogram in October.
Hope you are keeping well x

[ditzy65]

Hi KC how's things with you..getting easier I hope xx

[Jo_BCC]

Hi Mrs_Merc

Welcome back to the forums, but sorry to hear of your latest diagnosis.  I'm sure your fellow forum users will be along soon to offer their support.  You might find more immediate support if you post in the Secondary forum as not everyone looks at all the posts now on this new system. 

Don't forget our helpline staff are just a free phone call away if you need to talk to someone in confidence 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

Take care,

Jo, Moderator

[Mrs_Merc]

Evening All

I have just registered after a while away from the forums. I was last here a few years ago before the website and forum changes and am thrilled to see all the wonderful improvements.

I was a member of the Darling Buds of May Chemo group of 2012, now returning following a bit of a shock diagnosis of secondary BC liver mets a few weeks ago. Takes a while for these things to sink in, but I'm starting to get there now.

Anyway - I would like to extend my best wishes to all, and look forward to starting to participate in what I found to be a very positive and helpful environment before.

Take care and hugs to all,

Mrs_Merc

[ditzy65]

Hi Donna
your GP should refer you to your Breast Care Unit but everywhere seems to be abit different. They will probably do a mammogram or scan depending how old you are. It's easy to say don't worry but of course you will...we are here to give you support as we have all been there. Let us know how you get on xx

[June_BCC]

Hello Donna198133

Welcome to the forums, this must be a difficult time for you.  As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

With best wishes

June, moderator

[donna198133]

Good evening all, I found a lump just over a week ago only tiny, I'm in to see the gp on Thurs,  I'm feeling quite scared to be honest and wondered what exactly will the doc do as u can't physically see the lump. 

[ditzy65]

Hi Mo..If you are ever unsure of something just ring your breast care nurse (BCN)..mine is brilliant. Hope all ok xx

[June_BCC]

Hello Minimo

Welcome to the forums.

Whilst waiting for replies maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

We also have a service whereby you can talk to a volunteer by phone or email who has been through a similar situation as yourself, this is called 'Someone Like Me' , here is a link to the sevice if you would like more details. http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support.

Best wishes

June, moderator

[minimo]

Hi All my name is Mo i was diagnosed with breast cancer in february, had a lumpectamy on the 5th march and got my results yesterday i dont have to have chemo just radiotherapy and tablets for the next 5 years, my breast is still swollen and warm is this useuall or should i contact someone? 

[ditzy65]

Hi KC

sorry to hear your shoulder is getting worse...I had physio on my neck and shoulders because i was so tense all the time..havn't been for awhile!!!! hope you feel better soon xx

i'm ok, soon be back to work full time.. it will be 6 months next month since i had my op...it has flown by!!!

keep up with the exercises and hopefully they will do the job

take care xx

[KC]

Hello Ditzy65,
On & off with sleeping still, pain in my shoulder getting worse, physio said to keep up with my exercises but difficult when it hurts.
How are you doing? X

[ditzy65]

Hi KC
how are you getting on..sleeping a bit better I hope
xx

[KC]

Yes I feel a numb, more on my boob, strange feeling, my op on lymph still sore.
I'm terrible at sleeping lately, blame it on the menapause, I'm 55...tried all sorts nothing seems to work.
Hope you have a great 50th when it comes xx

[ditzy65]

Not doing too bad, back at work 5 mornings a week now...still get very tired, don't sleep much. I have been having physio too on my neck and shoulders as i feel tense alot of the time. My arm is still numb at the top from Lymph node biopsy..is yours??

Life goes on doesn't it lol...I'm 50 this year and have never looked more forward to a birthday!!

Take care, hope work and physio go well xx

[KC]

Hi,
Yeah doing ok, back to work Thursday, see how that goes.
Surgery affected my shoulder a little bit, it's a bit stiff & hurts with certain movements so need more physio on it to loosen it up.
Apart from that just doing everyday things, try to go out & about as much as I can, could do with a holiday, some sun would be nice! 🙂
How's things with you, are you feeling any better x

[ditzy65]

How are you getting on KC?
XX

[Lena2]

I was diagnosed last Tuesday and am having my ct and bone scan this coming week. I am more worried about these in case they find anything else. Keep strong that's what I am trying to do not just for me but my husband.

[Rafi]

Hi Gazzlyn

This is my first post and as you seem to be going through something similar I thought I shoudl write. I had DCIS in my left breast in 2013 and had a mestectomy and DIEP flap reconstruction. My sentinel node was clear so I needed no further treatment. My first mammo since was Dec 14. I was diagnosed with DCIS again. Pretty unusual. I decided to have mastectomy to the right too and whilst it was a blow I knew it was the right decision. This was 2 weeks ago.

This Wed I had the devastating news that the DCIS was hiding a tumour. It was small and was removed but my sentinel node is infected.

I am now goingt o have to start chemo and herceptin. I am gutted and scared. Like you my family want me to have the extra security and go for all the treatment.. I have 3 sons and the youngest is 9. I feel guilty as I am putting stress on them all. My eldest has his GCSEs this year.

I am sorry that you are missing 2 lovely events this year and wonder if we should help each other through. Do you know when you start treatment? I am hoping to find comfort in this site. Family and friends are amazing but soemtimes it is easier to chat to a stranger who knows how you feel. Feel free to write to me whenever. xx

[KC]

Thanks ditzy65,
Yes we'll have to get through best we can, glad I'm not on my own with these feelings.
Nice of you to reply..
Take care x

[ditzy65]

Hi KC

Glad you are recovering physically and I totally agree with everything you have said. I am getting there body wise, scars still abit painful, but it is now that my head is all over the place. People do think all gone back to normal, but i don't ever feel that i will be normal again!! I'm back at work and put a front on to get through..as you say i try not to dwell on things and get quite cross with my self lol.

Keep looking after yourself xx

[lexilou3]

Hi all - especially MrsBojangles,

I must admit I find the forum a little confusing with simialr threads popping up all over. I was diagnosed with DCIS last March - but surgery then revealed it was a little more than that. What I would say is trust your team, they want the best for you, and always take a trusted friend to your appointments. I tried to write closed (Yes / No) questions too - so that I could quickly jot the answer, before moving on. I found the staff allowed me the time I needed for all my questions & in my unit they ask if you want copies of all letters sent to the GP.  For me - most definately.

I have found recently a brilliant little booklet - it raises many issues, not all which I had, but like on the forum here, it was good to see anothers perspective who had been there, & had so much done too. The author is a clinical psychcologist & a lady who has had a breast cancer diagnosis. Cordelia Galgut: Emotional support through breast cancer.

[KC]

Hi ditzy65, how you doing, things are ok with me physically, I don't hear from friends & family as much now, think because I'm recovering well from my surgery i have gone back to normal, but it's your head tho that is the hardest to get right again, & trying not to dwell on things too much.
I'm due to go back to work soon hopefully that will help.
Take care x

[ditzy65]

Thanks KC...

Treatment has changed so much over the years and is so more advanced so I have to put my faith in the system lol... My little tablet of Tamoxifen is my life saver at the moment.

Hope you are doing ok xx

[Lucy_BCC]

Hi MrsBojangles and welcome to the BCC forums

I am sure your fellow users will understand just how you are feeling at the moment, along with the support here please feel free to call our helpliners to talk any concerns or queries through, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Here's a link to further information and support in our 'Just diagnosed' pages which I hope you will find helpful:

https://www.breastcancercare.org.uk/diagnosis

Take care
Lucy BCC

[KC]

Hi ditzy65, I feel same about will the cancer return elsewhere, maybe in my other breast i'm thinking, good thing I go yearly for a mammogram on my boob, it's going through the wait & result of it that test that I am not looking forward to again.
I don't think you sound negative, it's natural to think of these things...it has been a scary time we have been through.x

[MrsBojangles]

Diagnosed today. Actually yesterday as it is after midnight. No idea what sort I have, or treatment plan yet, Addenbrookes is my local hospital. Anyone else in a similar position?????

[KC]

Hi gazzlyn, thank you for your advise, so sorry to hear you had to cancel your plans for holiday & especially your daughters wedding.
I am glad I joined the group, it has been a help to me.
Hope everything goes ok for you in the future.
Thanks for replying..take care..Kc x

[gazzlyn]

Hi Ditzy and KC, Welcome to the group, I am sure you wished you didnt have to join but everyone is so supportive here and if ever your worried there is always someone that seems to pop up with some advise.  I am confused how I got to this thread as I usually go on the "newly diagnosed thread" thats where it seems to be happening with responses.  I had invasive ductal cancer grade 3, had surgery WLE 3 weeks ago and then got the bombshell on Thursday that they think I should have chemotherapy as due to my hormones they feel tamoxifen would not really work.  Basically I have no safety net should a "stray cell" be found.  I was absolutely gutted as all along I was thinking surgery and radiotherapy.  They suggest chemo because its a grade 3 and fast growing.  Its really hard to get your head around especially as my sentinal node was clear and they removed the cancer with good clearance.  My family, especially my daughter feels chemo will just give me that extra safety so here I am waiting for a date.  We were due to go to Mexico end of April so had to cancel that and my daughter was getting married in Antigua in July so again that has been postponed.  So all in all I am not feeling great right now.  I am sorry I cant give advise or help you with your surgery as its completely different to what I had, but have a look on the Newly Diagnosed thread and someone on there may have had similar to you both.  Hope your taking it easy and I wish you both well with your recovery xx Lynda xx